Barriers experienced by organ procurement organizations in implementing the HOPE act and HIV-positive organ donation

Abstract

In the seven years since the HIV Organ Policy Equity (HOPE) Act made HIV-positive organ donation to HIV-positive recipients legally permissible in the United States, there have been fewer HIV-positive organ donations than expected. Organ procurement organizations (OPOs) play a key role in the transplant system and barriers at OPOs may be partly responsible for the relatively low number of HIV-positive donors. To understand potential OPO barriers, we conducted semi-structured interviews with 20 OPO staff members. Interviews were recorded, transcribed, and analyzed using a conventional content analytic approach with two coders. OPO staff had high levels of knowledge about HOPE. Many had evaluated referrals of HIV-positive donors and approached families for authorization. Barriers to HIV-positive organ recovery identified included obtaining authorization for donation, potentially disclosing HIV status to next-of-kin, and fear of HIV infection among those engaged in organ recovery. Strategies to overcome these barriers include providing continuing education about the specific tasks required to procure organs from HIV-positive donors, implementing targeted interventions to reduce fear of infection, and developing partnerships with HIV advocacy and care organizations. Given the central role OPOs play, HIV-positive donations are unlikely to occur in significant numbers unless these barriers can be overcome.

KEYWORDS:

• Organ procurement organization
• HOPE Act
• HIV
• qualitative

Acknowledgements

The analyses described here are the responsibility of the authors alone and do not necessarily reflect the views or policies of the Department of Health and Human Services, nor does mention of trade names, commercial products or organizations imply endorsement by the U.S. Government.

Disclosure statement

Jeremy Sugarman is a member of Merck KGaA’s Bioethics Advisory Panel and Stem Cell Research Oversight Committee; a member of IQVIA’s Ethics Advisory Panel; a member of Aspen Neurosciences Scientific Advisory Board; and has consulted with Portola Pharmaceuticals, Inc. None of these are related to the information described in this manuscript. Brianna Doby has received research support from the Mid-America Transplant Foundation and consulting fees from the Arkansas Regional Organ Recovery Agency. The other authors of this manuscript have no conflicts of interest to disclose as described by AIDS Care.

Data availability statement

The data that support the findings of this study are available from the corresponding author, ZP, upon reasonable request.

Additional information

Funding

This work was supported by The National Institute of Allergy and Infectious Diseases: [Grant Number 1R01AI120938,U01AI134591,U01AI138897].